Ryan Russell was a self-described “super healthy” athletic dad of three who was enjoying personal and professional success. But then the mystery headaches began.
They felt like severe migraines, he recalled. Starting in April 2022, the pattern would be similar every time: Russell, 39, would drop his son off at school in the morning, work out and feel the pain coming on.
“About 20 minutes after leaving the gym, I would just start to get an incredible amount of pressure in my head. It would lead to these headaches and it would cause some vision issues — tunnel vision, things like that, which was just really odd,” Russell, now 40, who lives in State College, Pennsylvania, tells TODAY.com.
He sought out medical advice right away, but it took three doctors to figure out what was wrong. The first thought it might be an inner ear-related or COVID-related problem. The second wanted to try a holistic approach.
Finally, the third doctor sent Russell to get an MRI. He still remembers the aftermath of the scan.
“If you’ve ever had an MRI, the expectation is you’re in, you pop out and the techs tell you, ‘Alright, we’ll contact you in a couple days with the results,’” Russell said.
“When they pulled me out, the radiation oncologist was there and asked me to please come with him and I wasn’t able to go home.”
What is glioblastoma?
The scan showed three lesions on his brain. Russell was rushed to a hospital for tests to figure out the next steps. In early May 2022, he underwent a craniotomy — surgery to remove a piece of the skull to access the brain. Doctors cut out one of the tumors, with that one chosen because its removal would have very little impact on Russell’s motor skills, language and emotion.
The diagnosis: glioblastoma, a very aggressive form of brain cancer. More than 13,000 Americans were expected to be diagnosed with it in 2022, according to the National Brain Tumor Society.
July 20 marks Glioblastoma Awareness Day, a disease that can affect anyone, at any age — the cause is unknown. Symptoms include persistent headaches, nausea, double or blurred vision, and changes in mood and personality.
The disease comes with a grim prognosis: The five-year survival rate is less than 7%, the National Brain Tumor Society noted. Treatment is difficult because glioblastoma grows tentacles into the brain rather than forming a solid mass that doctors can target and remove.
“You look up what it is and that’s a pretty brutal read,” Russell said. But he was determined to find all possible avenues of treatment, connecting with specialists at Duke University in North Carolina and Lenox Hill Hospital in New York.
Trying a personalized vaccine
Russell received chemotherapy and radiation, the standard of care. He continues to receive Avastin treatments, described by the drug maker as a "tumor-starving" therapy, every other week.
Russell is also getting a personalized vaccine, for which he travels to Europe and pays out of pocket. That regimen began in December 2022 and will extend for at least a year.
When TODAY.com caught up with Russell in March 2023, he'd had three treatments, and planned to travel to Germany every five weeks for the therapy. Each treatment involves four shots into his abdomen.
He's had some side effects, most noticeably aphasia, which affects his short-term memory. "This is not major and doesn’t have any ill effects on my daily activity," Russell says. "I’m feeling very well."
The vaccine, made by a company in Germany, is not available in the U.S. because there haven’t been formal clinical trials in America for this particular shot, said Dr. Douglas Colkitt, a retired radiation oncologist in Sarasota, Florida, who has been consulting in Russell’s case.
It’s a form of immunotherapy: Tumors create what Colkitt called a “force field” that protects them from being destroyed by the body’s immune system, and glioblastomas have one of the fiercest “force fields.” That makes it very difficult for conventional chemotherapies to have anything but minimal benefits, he said.
The vaccine approach takes cells from the tumor itself, plus certain cells in the blood stream, to create a personalized vaccine to help the immune system conquer the “force field” and destroy the tumor naturally, Colkitt noted.
Results from German trials have been “very encouraging,” he said, citing a small study that found more than 80% of patients who received the vaccine made it to three years after diagnosis.
“There is, in my opinion, after much research, real hope for what is perhaps now the most difficult cancer in the human body to survive past a very limited window,” Colkitt said.
But the study sample was small, just over 30 patients, and U.S. clinical trials of similar vaccines have been less encouraging, he noted.
Tumor vaccines for glioblastoma remain experimental, said Dr. Evanthia Galanis, an oncologist at the Mayo Clinic's Brain Tumor Program in Rochester, Minnesota. They're available in the U.S. as part of clinical trials, but haven't met the efficacy threshold necessary for wider availability, she added.
Progress in treating glioblastoma has been "very slow," with only one drug and one device approved in the U.S. in the last 15 years, Galanis said.
Re-prioritizing what's important in life
Still, Russell said he was excited and very hopeful about the treatment. Doctors think his tumors have been slow-growing so he’s been able to stay in relatively good health. The brain cancer is not affecting his speech or his ability to work as an associate professor of graphic design at Penn State University.
Russell undergoes a quarterly MRI and when TODAY.com caught up with him in March 2023, almost a year after his surgery, the latest MRI from two months prior showed no tumor growth since the original diagnosis, he says.
The dad is finishing designing a children's book, a project he began working on when he found out about his brain cancer.
He and his wife, Samantha, have been open with their three children about his diagnosis, though they don’t call the disease “cancer,” and have emphasized they’re going to deal with it as a family. They maintain a blog to document their journey.
Meanwhile, Russell is focusing on the big picture.
“I’ve had the real luxury of being very successful in my life… (but) I was always someone who was thinking about the next thing, and never celebrating, never enjoying what I was doing. And what this diagnosis gave me the opportunity to do was just re-prioritize and really start to think about: What is it that I want to do?” he said.
“No more putting off till tomorrow because we don’t know what tomorrow is.”
